Jesus and Java

Midnight dinners at Duke can be very delicious but I doubt very healthy. My chicken salad sandwich will satisfy the taste-buds nicely with it’s green leafy stuff, sharp cheddar cheese, mayo, tomato, and banana peppers, all spread out on a couple nice pieces of sourdough bread. I forgot to mention the extra pickles the lady tossed in for good measure. Yummy.

Lauren is doing pretty good. She was moved out of the PICU late this evening and we now have a private room on the floor. This was not supposed to happen until at least Monday. It has it’s mixed blessings. The reason it happened sooner then later is due to the tear in her spinal drain tubing. They had to take it out to reduce the risk of infection which could be really bad since it is literal draining CSF from her spinal/cranial area. The good news is we may go home sooner then expected. We are hoping the CSF leak is fixed and will only really tell with time and healing. Lauren is still pretty swollen on the left side of her face and the area behind her ear has to heal all over again. The good news about the surgery is that it went better then the doctor thought. He was able to save her ear drum and the “hearing bones” of the inner ear. She may still need a hearing aid in the near future but we won’t know until they can do a hearing test after she has healed more. Another huge plus is that we have changed her feeding schedule while we have been here so she will no longer be getting a feed all night long. She will now have 6 larger feeds throughout the day instead of 4 smaller ones and the long night feed. This will make the transition to not having a nurse at home (when the time comes) much easier.

We’ve been praying for a few families we have meet here this time around. The first is in the PICU and we shared a room with them, it seems that the doctors are trying to figure out what is going on and it’s been a difficult process. Another was across from us in the PICU (in the next room) and was flown in from Texas via a medical transport, much the same way Lauren came to Duke on one occasion. The third I meet tonight, the mother and her family where looking at Lauren from the hall since she is such an outgoing person and apparently cute as all get out (I’m not bias or anything). They have been here since Tuesday and will likely be here throughout next week. Their son has seen many of the same doctors we have and we can relate to their heartache.

I’ve been able to interact with a lot of the Peds staff this time around and I’m grateful to hear their stories. I truly enjoy talking to people when they are willing to be open and engaging in return. It also helps that they are stuck in a room with you for their entire shift. We have had some good laughs in the last few days, not to mention the head or two that pops in to watch college football on your flat panel TV with you when your daughter is sleeping.

So Lauren made it through surgery just fine. They got the spinal drain in which was going to help drain fluid and keep pressure off the area they where going to repair. Well, the repair did not happen. From my understanding (since I was not there) when they got in there to do the repair the saw tissue pushing its way through the bone and they are not sure of it’s brain tissue or tumor so they could not proceed any farther. They did a biopsy and sent it off but it’s going to be a few days before they get the results. They also did some stuff with her left ear which will likely have a major negative effect on her hearing but we will wait and see.

Lauren will remain at Duke for the next 5 days as planned and at the moment will come home. Then once they have the results and they can get everything organized again they will bring her back into the OR for the surgery again, this time to either repair like they where going to before or to remove tumor and repair depending on the results of the biopsy.

I’m still feeling like junk on and off. Rebecca is having to miss work tomorrow to sit with Lauren since I’m not allowed near the hospital right now due to my lovely new friend H1N1 taking up residence in my body. Duke has also put Beck and her parents who are visiting us to help out on meds for H1N1 just to be safe. Don’t worry Lauren has been on the meds for H1N1 since they found out that I had it. No one is allowed to visit Lauren, Rebecca is having to fully gown to see her in the PICU and I’m not sure if that is going to be the same when she goes to to step down.

I really don’t know what else to type at this moment other then asking for your continued prayer for our daughter and her health.

Driving to SC to play music at a wedding tomorrow

My Mom is up from FL and going with me to said wedding

Lauren has an eye appointment tomorrow at Duke, we are betting we will be doing patching again

Lauren is really on my mind tonight, I’m trying to put my head around everything and it’s kinda rough (she’s fine, It’s personal and just not an easy night for me)

Father’s Day, my Birthday, and our 6 year wedding anniversary in a matter of weeks.

VBS at church coming up

Student Life @ Daytona Beach for our student ministry in July, looking to meeting up with a blog friend

World Changers starts Sunday

Need to carve out family time

Need to pay bills with money that does not exist

Trying to remember to bring David back his CD’s tomorrow

Did I pack deodorant?

Some people have been asking for new photos of Lauren. Rebecca and I have taken some so I thought I would upload them here to share.

Easter Egg Hunt by Dan

Easter Dress by Rebecca

Easter Bling by Dan

Climbing on the Toy Box by Rebecca

This is how life roles when you can’t get a break in life. The first house we had under contract has fallen through and we lost some money, granted it was not a large amount to most people, but to us it was. We where able to get the rest of our money back, thank God. The more our agent dug into things the more fishy it became. I’ll post details later. We want to put an offer on another house but can’t until at least Monday when we are officially pulled out of the current one. If this too falls through we will be stuck in a rental for at least another year. We are really tired of having to move, especially with Lauren’s medical condition, it makes it that much more difficult. We never did fully move into our apartment as some of you who have seen it can attest.

Lauren is doing well, taking first steps and signing more, I will work on getting some photos up of her doing this. She is after all growing like a weed. We see the plastic surgeon in July to get on with the next leg of surgery and hopefully in 6-9 months or more removing her trach, but we are done holding our breath for that to happen (pun intended).

I miss posting photos for Photography Friday and hope to get back at that soon, there is so much to shoot here in the triangle. Finding time is a whole other road I’m not going to travel down.

I was actually going to take a sabbatical from blogging but well… I did for a few weeks. Hope all is well in everyone else’s world.

As a side note, we have raised between $700-$1,000 for the Ronald McDonald House of Durham, If you would like to help out please click the link in the right column to donate.

So Lauren is going into surgery tomorrow to biopsy a mass in her nasal area to see if it’s tumor or just scar tissue from a previous surgery. They are also going to look at the tube in her left ear, downsize her trach, and do some other stuff. Please keep her in your prayers.

The tentative plan is to keep the trach until after the plastic surgeon does his work to repair her palate which will be some time after July of this year. So we are looking at least another 9 months (we think) or so of her having the trach, we where hoping to get it out within the next month or two but that is no longer the plan.

She is going very slow with the eating by mouth thing and is not taking in enough to even do a swallowing study so we are a long way (at least 2 years) off from getting that taken out unless she decides to make a drastic change. Every time we make some progress forward we go backward because of a surgery or something.

We are very thankful of the people who work with us here, they are some of the best in their fields and do an amazing job.

We are also making an offer on a house in our area and there are a lot of variables so please pray that if it’s God’s plan it would work out.

***If you have not done so and would like to donate to the Ronald McDonald House of Durham you can do so by clicking the link in the right column of my blog.***

I want to thank you all for your support and prayer for Lauren, she is now a whole 1 year old and we could not be more amazed with this child God has blessed us with. It has been far from easy as many of you know, but this is the life God has blessed us with and we continue to live it one day at a time. I have to say someone asked me if we could go back and change everything would we? The answer is no, we would not change a thing, Lauren is Lauren and we have grown into who we are because of this last year. We where told recently that we treat our child like a baby not like her illness/disease/diagnosis or whatever you want to call it, that made us feel good. We desire to be parents first.

So on that note I wanted to share that we raised $632 for The Ronald McDonald House of Durham at Lauren’s Birthday Party and people are still calling the church about donating. This does not include any online giving which some of you have said you have done. I hope to find that out soon to give you a more exact figure. I want to thank you all for your support in this. Rebecca and I are looking forward to taking Lauren and the money we raised on her birthday to the Ronald McDonald House of Durham later this week. If you would like to donate you can still do so online at any time, I’m going to post a link to do so on the right column of my blog later this week, but for now you can click here.

So here is the video I showed at her party of her 1st year of life, it’s not the best quality since we don’t own a mamajama video camera but I think you will enjoy it just the same.

[youtube=http://www.youtube.com/watch?v=8s348MdqdJU&hl=en&fs=1]

HAPPY BIRTHDAY LAUREN!!!!!!!!!

I just wanted to drop ya all a line and wish you a Merry Christmas from the Duke ER. We got here just before midnight on Christmas Eve, Lauren’s heart rate has been around 180 and has hit above the 200’s, she has a fever around 101, and is really fussy. The ER is not busy right now, which is good for us. They still took her back immediately from the front of the ER since she is considered immune suppressed. We just had a x-ray done and they are doing a quick catheter to get a sample of her urine. More updates to come.

Lauren came home Sunday afternoon and all is going well so far. We have follow up appointments in the next few weeks.